Sterling, Michigian resident Matt Baughman is a pretty regular guy. He loves his family, friends, sports, and cruising. Matt is also on the autism spectrum, but wasn't diagnosed until he was 30 years old. Now 40, Matt says the diagnosis finally explained a lot of things, especially feeling overwhelmed by many day-to-day responsibilities.
Matt first cruised with Autism on the Seas in early 2019 with his mom, Marg, who passed away last June. Needing a break and a distraction from his grief, Matt decided to book a solo cruise with AotS when he learned that Sandy, the group leader from his first cruise, would be a staffer on an August cruise to New England and Canada.
"I met Sandy on our first cruise and we kept in touch," says Matt. "I knew if she was on the New England cruise, I would be okay, so I booked it and got a one-on-one AotS staff companion. It was great because I had someone to do things with when I wasn't attending respite time or activities with others in the program. Alicia came with me on excursions, trivia night, and the nighttime shows."
LISTEN to our podcast interview with Matt
Matt is an entrepreneur and advocate for people with autism. He regularly sets up a stand at the local mall and sells autism awareness sundries to educate families and help them to understand the importance of getting their child diagnosed early so they can get the help they need. He even made the local paper back in his hometown!
Matt's advice to parents with kids on the spectrum is to find ways to communicate with them the best way you can and get them into therapy as soon as possible.
The big thing for Matt on his solo cruise was gaining a sense of independence and belonging. "When I cruised with my family, I had no one else that was like me to interact with. I wish I had done this sooner. I had a lot of fun and participated in everything I wanted to and Alicia really helped me."
We look forward to hearing about your Bahamas cruise, Matt!
New Jersey native Allison Ariemma is a special education teacher with the Passaic School District. She has also volunteered her time as a professional staffer with Autism on the Seas for the past three years. Allison has helped families with special needs fulfill their vacation dreams on half a dozen cruises and has three more scheduled between this year and 2020. She talks about her experience as an AotS staffer and the special bond she formed cruising with the Perry family and their son, Cole, a 10-year old on the autism spectrum.
LISTEN to our podcast interview with Allison Ariemma
AotS: As a fulltime special education teacher, what made you decide to take on a volunteer staff role with Autism on the Seas?
Allison Ariemma: I initially applied for a volunteer staff position with Autism on the Seas purely out of curiosity. A friend of mine who does ballroom dancing with individuals in wheelchairs actually found it through many of her travels, and sent me the link. My gut reaction was, "This is pretty cool. I could travel and do something I love." But I've continued to go back because it just means so much more than traveling. It's honestly the best feeling in the world.
AotS:On your last two cruises,you were assigned as a one-on-one staffer to the Perry family. Tell us about that family, and how that came together?
Allison Ariemma: Well, I met the family last July on the cruise to Alaska, and there was just an instant connection with the mother, the grandmother, and the little boy, Cole. The family was so sweet, outgoing, and bubbly that it was kind of hard not to fall in love with them. I remember we would rotate each dinner and whenever I sat with them, it just felt like I was sitting with my own family at the dinner table. We've continued to cruise together twice since then and we're trying to book a third relatively soon.
AotS: So you clicked with Cole and the family on the Alaskan cruise, and when they decided to book their next cruise, they opted for One on One staffing and requested you?
Allison Ariemma: Yes. Kristy Perry actually messaged me and said, "Hey, how do you feel about taking some days off in January?" I made sure that it worked with my teaching schedule and we booked it together. On that cruise, we actually booked the following cruise that took place this past July. So we have a nice little July, January, July pattern going on.
AotS: In your opinion, what is the key difference between being assigned as a one-on-one staffer versus working as general staff, where you're assisting with the overall group?
Allison Ariemma: In addition to getting to know the personality of the child or adult that you're working with, you get to know the family's personalities really well. You get pretty quickly in tune with their schedules. You'll know if they are early risers or late risers, what they like to eat at every meal, etc., so you can have it ready for them or for their child. You get a general idea of what they're going to do on the days that we're on the ship, as well as the days that we're in port, so you can plan your day around theirs. And you can see where you can push them to try new things, and where they like to stay in their comfort zone. So I took whatever I learned from the first cruise and I pushed them a little further on each cruise to raise the bar on their comfort levels.
AotS: Have you seen any changes or developments in Cole during the cruises? Has he done anything on the last cruise that he didn't attempt on the first two?
Allison Ariemma: Well, the first cruise, I remember he always had to wear his life jacket and he only liked the hot tub. He's a little California boy, so he loves warm temperatures. But the last two cruises we've gotten him to go in the hot tub, or in water in general, without the lifevest. This last cruise, I got to watch him go into the ocean for only the second time in his life. He definitely likes calmer waters, more so than wavy open waters. But the fact that he was even willing to try to go in without a life jacket was a pretty big development and he was extremely happy.
AotS: As a 10-year old on the autism spectrum, what are some of Cole's specific challenges?
Allison Ariemma: He is kind of a selective speaker. He has to warm up to you before he actually starts to talk to you. Which I've seen him... It took a long time on the first cruise, and now with each time I see him, he kind of opens up a little more. The first couple of days he goes to respite, he'll be standoffish with everybody. But the more he goes, the more open he gets and willing to participate. He really, really loves Snapchat and videotaping things, so anytime he can try to catch himself on camera or catch somebody on camera, he kind of instantly connects with you.
AotS: Was Cole enthusiastic about trying some of the onboard activities?
Allison Ariemma: He was definitely very hesitant at first, but we kind of pushed him with love. We have tried the rock wall and that is not his favorite thing, but we've participated in just about everything from the water slide and rollerblading, to ice skating and the trampoline, which he actually really loved. It just took him some time to get used to having to be harnessed up and attached to the apparatus. But, like I said, his favorite thing to do is to go in the hot tub. So if he could spend all day there he would.
AotS: How do you think your experience as a special education teacher has played into your effectiveness in assisting AotS families on these cruises?
Allison Ariemma: I think having the background knowledge in any student group with special needs, is extremely helpful in understanding how a child may react in certain situations. But I think something that this company did for me that I think I needed to get in touch with, was my more compassionate, caring side. And understanding that not everything is procedural like it is in a classroom. Understanding how the families manage throughout their day has been extremely helpful for me as a teacher to see that. It made me understand the parents' side and it made my heart bigger for these families.
AotS: After working with other AotS volunteer staff from a diverse range of educational and career backgrounds, were you surprised at the caliber of your co-workers?
Allison Ariemma: It's honestly incredible when you get to meet people that are doing the same thing you do, and they love what they do. You realize how wide this world is. I've met people who are administrators in special education, which is what I want to be. I've met college professors, I've met fellow teachers, I've met behavior analysts. And it's just incredible to hear and see us come together and work towards a common goal with our special needs families. We feed off each other's energy. For the first time, it's not completing task analysis sheets or collecting data. It's using our hearts to help these families.
AotS: How do you think the guests feel? Do you think that they're surprised when they realize that their volunteers are real professionals or young adults studying to become a professional -- not just kids volunteering to get a free cruise?
Allison Ariemma: I think the first day parents are a little bit confused as to what we're there for. And I know that sounds silly, but we're not only there for the kids or the adults with special needs, we're there to make sure that the families are enjoying their vacation. So when parents are like, "Wow. I can really just check my emails because you're swimming with my child?" Or, "Wow, I can take a nap during respite?" Those are things that they're so in shock that we provide to them. And to us, it's something we take for granted. You know, being able to just do simple daily things. And they learn to trust us pretty quickly. Some families quicker than others, but once you gain that trust the families are like, "All right, see you in two hours. Enjoy respite. I'll be back." And they get to have a real vacation.
AotS: Is there anything that I didn't ask you that I should have about your experience with Autism on the Seas?
Allison Ariemma: You know, I started out my volunteer journey with AotS kind of selfishly because I wanted to travel and do something I love, but I keep going back. And you know, most people who cruise with me have seen me cry many times at the end of the cruise, because it's just the greatest feeling in the world to be able to help a family and to help the children or adults. It's something people look their whole lives for, something that makes them happy, and that's genuinely what makes me happy.
Durkin Family on an excursion to the leaning tower of Pisa, Italy.
On August 4, 2019, history was made when Autism on the Seas departed from the port of Barcelona, Spain on its first staffed cruise to Europe with special needs families. The 8-day adventure featured ports of call in Marseille, France, La Sperzia, Rome, and Naples, Italy, and Mallorca, Spain.
This past week, we reached out to Nina Durkin, one of the guests who cruised with us to Europe. Nina was traveling with her husband, daughter, Amanda (12), and son, J.T. (15), who is on the autism spectrum. This is their story.
LISTEN to our podcast interview with Nina Durkin
AotS: You have been cruising with AotS for a while now, right? What made you decide to take the family abroad?
Nina Durkin: Yes. This was our fifth cruise. We started cruising with Autism on the Seas back in 2016. My husband and I went across the pond to Italy almost 17 years ago and saw this as an opportunity to bring both of our kids to a place where we've been before. My daughter, who is neurotypical, is a huge history buff.
AotS: Yes, tell us about that. I understand, contrary to what people might assume, that you actually had Amanda in mind when you booked this cruise with us.
Nina Durkin: Yes. Again, she's a huge history buff and loves the Roman Empire, loves ancient ruins and this was an opportunity for us to take her to Europe and know that we have help with our son so she could actually enjoy the trip.
AotS: This was also your first time opting for one-on-one staffing, right?
Nina Durkin: Correct. We did opt for a one-on-one. The nature of this cruise was not the typical Autism on the Seas cruise where you have a couple of sea days. This was very port intensive. It docked every single day except for one, on a seven night cruise.
So it wasn't the most relaxing cruise, but personally, I don't view a Mediterranean cruise as one where you relax. You want to go and get a taste of what each port can bring. So you can maybe go back someday.
AotS: So how did JT react to all of this?
Nina Durkin: Surprisingly wonderful. So our biggest concern was some of these long day excursions. The ports are not necessarily the closest to the cities. For example, Florence was just under a two-hour drive from the port. If you want to see everything, it's anywhere from a nine to 11 hour day.
The kids, the adults, everyone's out of their comfort zone. Even though people speak English, it can be broken. The laws are different in every country and it can be a little stressful. J.T. was a champ. He took it in stride. He seemed to enjoy himself. We walked a lot, which was a huge concern of mine. I think we actually clocked about eight miles in Rome just walking around. It was hot and he surprised everyone. At the end of the cruise, on our sea day, there's always a little party and then awards are given out and J.T. got the excursion award because he did amazing on all of these long excursions.
I do think his favorite was making pizza in Sorrento and we did a catamaran excursion in Mallorca, Spain, which had some snorkeling and swimming in the Mediterranean sea. Those were probably his favorites.
AotS: When you take him to places that he has not been before, does he normally get nervous or shut down or anything like that?
Nina Durkin: He tends to get very anxious, especially in crowded places with unfamiliar things around him. The fact that he had familiar people with him did help a lot, but he has been known to have some unexpected behaviors in public that can be concerning. When you're in a foreign country you worry about a lot of things. People looking and staring if he decides to scream out of nowhere. And that's a big reason why we chose to have a one-on-one for this trip. The long excursions. If anyone needed a break, including our one-on-one, at least we could shuffle among the three adults. That helped them out too.
AotS: How did the staff do with JT?
Nina Durkin: Oh, Renee is amazing. We actually met Renee on her first Autism on the Seas cruise back in 2016 and we did not have a one-on-one. She and JT just hit it off. There was some magical connection. So when we knew we wanted to do Europe, we did ask for a one-on-one and then said, Hey, is it possible we can get Renee? So they already knew each other. They already knew their little idiosyncrasies. The only difference is now JT is taller than Renee. She is so fantastic with him and she's wonderful with my daughter. So yeah, when he was getting tired of Renee, my husband or myself would step in and Renee would spend time with my daughter.
AotS: What about you and your husband? Did you do anything together alone? Did you take advantage of the respite?
Nina Durkin: We did take advantage of some of the respite. Again, this was a slightly different cruise. Visiting a new port every single day on these long nine and 10-hour excursions, you are completely exhausted by the end of the day. You're getting back to the ship at six o'clock at night, you're grabbing dinner. My kids were tired and we were tired. So we didn't necessarily take advantage of respite in the conference room, but we did take advantage of a little bit of respite in our room.
Renee would come to our room to do some of the respite. So my husband and I could, if anything, grab a cup of coffee at night by ourselves, which was nice, but we were all tired. On a regular Autism on the Seas cruise, you don't have nine-hour, 10-hour, excursions day after day. You have a beach excursion with the staff for half a day. Yeah. So that's what makes it so much different. It's not bad, it's just a different kind of cruise.
AotS: The expectation is many of the guests have not been to some or all of these countries before and they want to soak it all in.
Nina Durkin: Correct. And because it was Autism on the Seas first European cruise, I think there were some unknowns for them as well. They had to schedule the ship activities that they usually schedule like time for the zip line, time for ice skating, time for flow rider. My kids love that flow rider, so I made sure I booked a small group lesson for them in case we couldn't do flow rider with the group because they love it so much. It turned out we were able to do flow rider with the group and we did flow rider with a small group lesson, too.
The Royal Caribbean staff is amazing with our kids. if it weren't for them, this Autism on the Seas and the volunteer staff, wouldn't work. So it's really a huge group effort.
AotS: It is a good partnership. Did you make friends with any of the other families?
Nina Durkin: Well, one family we had cruised with before, which was wonderful. It's always nice to see families that you've seen before. We were all going in different directions on excursions, but there was one family we met very early on in the cruise. We were on a catamaran excursion to Mallorca and we noticed a family that had twin girls walk into the auditorium waiting to take the excursion. Immediately I knew they were in the group, because they were wearing the good old orange lanyards. We had Renee, our one on one with us, and I said, "Hey, let's at least take a look over there. The girls seem to be having a little bit of a hard time. Maybe we can all help out."
One of their daughters took a liking to my son, which is fine, but she tended to grab and tug at him, which bothered him at first until we explained that that's how she talks, that's how she says she likes you. And then I will tell you, I have a picture of them on the last day of the cruise holding hands. It was amazing. It was the sweetest thing and I have to be honest, that probably made our cruise. We love meeting other families. We all get it. It's also nice because even the people on the cruise, they see all these orange shirts, they see all these families with the lanyards. They ask us questions and for whatever reason on the cruise ship, it just seems to be a little bit more accepted than in everyday life.
AotS: What was your favorite port? And why?
Nina Durkin: That's a tough one. Okay. So I've been to Italy before and I am personally in love with Florence. I also really loved Barcelona. We had the opportunity to stay in Barcelona a little bit before the cruise and a little bit after. And I really enjoyed it.
AotS: What do you recommend for parents like yourself who have put off taking that amazing vacation because they have a child that has disabilities and they're just scared? What do you tell them?
Nina Durkin: So there's a couple of things. The first is, I would not consider our family a cruising family. Before we found Autism on the Seas, we preferred to fly somewhere, go on vacation and fly home and not be on a ship the whole time. Today, I will tell you right now, we will not travel without staffing from Autism on the Seas because it's the only way we feel we get any kind of vacation. Where we can relax. My husband and I can reconnect and we can take a break, a true break.
AotS: And reconnect with your daughter too.
Nina Durkin: Absolutely. Reconnect with our daughter and make her feel special at the same time. What I would tell a new family is take absolute advantage of the parent connect service that Autism on the Seas offers. On their website, you can ask to be connected with parents who have cruised before and ask your questions and get them answered. The parents will be honest. They'll tell you the good, the bad, the ugly and get all those fears out of the way. Nine times out of 10, I feel that's the only way to travel.
I'm very spoiled. In fact, we're so spoiled, we have another cruise booked next summer with a one-on-one and we are crossing our fingers for an Alaska cruise in 2021.
How do you teach empathy to students embarking on a career working with the autism community and their caregivers? According to Dr. Potter, it's not something that can be learned from a book, but it can and has been cultivated by exposing Master-level students to families on an Autism on the Seas family cruise.
We interviewed Dr. Potter to share her vast experience as an educator, mom of a teen with autism, frequent AotS cruiser, and volunteer group leader and staffer with AotS. Dr. Potter started her career as a special education teacher and then later became a board certified behavior analyst. She teaches courses that prepare future teachers in special education, including certification in autism spectrum disorders. But she says the program at Mary Baldwin University that is really her baby is their Applied Behavior Analysis program, which is centered in preparing practitioners to work with individuals with a variety of developmental disabilities, including autism.
Listen to our interview with Dr. Rachel Potter
AotS: How did you initially get involved with Autism on the Seas?
Dr. R. Potter: Great question. I first heard about Autism on the Seas from one of my students who was completing an assignment for one of our autism certification courses. They were asked to look into resources at a national, state and local level that were related to special needs families and recreation. One of my students turned in her assignment about Autism on the Seas. She hadn't any personal connection herself, but came across it doing her research on the internet. So the professor in me, of course, assessed her assignment. I'm not sure, she probably got an A. Then the mom in me thought, "You know what? My son is seven and I have never taken a family vacation because I'm terrified. I'm worried my son's going to run off or have a tantrum or get lost, or people are going to look at me funny, or people are going to judge me, or it's going to be a miserable experience." And this is coming from somebody with expertise in that area. I can only imagine what that might be like for a parent or family who doesn't have that background and experience.
So we took our first family vacation and Eric's younger brother, who's neurotypical came along and the first day was terrifying. I thought, "Okay, my son's gonna jump overboard and he's going to drown and this is going to be horrible and I've just wasted money and this is a miserable experience and what have I done?" But within hours I knew that it was the best decision I could have possibly made.
AotS: What was it that made you settle down?
Dr. R. Potter: Truly, people and relationships. I think that's one of the things that Autism on the Seas does exceptionally well and takes a great deal of pride in -- the relationship that the staff and the group leader build immediately with families, that creates a sense of trust and community. It was exactly what I needed at that moment. I suddenly knew that I was surrounded by people who, not only other families who weren't going to judge me because they've experienced this themselves, but I was also surrounded by people who were going to help me and that it was okay for me to ask for that help and ask for that assistance. On that first day, I know I cried out of frustration, but I also cried out of joy by the time the day was over.
AotS: So you had that experience and then you got involved on the other side assisting parents, like yourself, as an AotS group leader, right?
Dr. R. Potter: I did. Because I saw the alignment between my professional world and my personal experience through Autism on the Seas, I wanted to engage in service to the organization and that seemed to be a good fit for my skillset and my work schedule. So for a number of years, I served as one of the team group leaders, leading staff volunteers to support families and serving as that liaison between the shifts and the families and making sure that everybody's needs are met for the duration of the vacation. I continue now as a volunteer staff member to provide those same services in a slightly different role.
AotS: What did you learn by working with other parents who have children with disabilities?
Dr. R. Potter: It's brought me into my own sense of empathy in terms of understanding just how different every child and every family situation is. We have had families sail with groups that I've supported with children on the autism spectrum as young as two, and as old as 42, and with varying levels of needs. And for me, I get great joy out of that variety and out of being able to work with each family and each child or adult child to make sure that they're having a very safe, first and foremost, but secondly, a fun and memorable experience.
I think as a group leader, in particular, you're prioritizing not just the child's needs, but truly the needs of the entire family. Because it's the family that's the client, it's not just the special needs child. You want that family to leave, not needing a vacation to recover from their vacation and that's what I remember.
So when I think about my AotS experience as a parent, I remember walking away from that cruise, not needing a week to recover, which is what I thought I was going to need. I wanted to replicate that.
AotS: What was your objective in bringing a group of your students on an Autism on the Seas cruise?
Dr. R. Potter: So we looked at that a few years ago and I had a serious conversation about which students would be best suited to this opportunity? We focused primarily on students who were in our teacher education programs or occupational physical therapy program. Initially, in developing the program, I think the intent was to supplement a course that they were taking related to autism. And they do take that course associated with it where they do some work ahead of time prior to the cruise and it sort of culminates with the cruise experience.
But when it comes down to it, the cruise part of that experience isn't about learning about autism. They've gotten that from the textbook. They've gotten that from their lecturers. They've got that from listening to me drone on and on. But what they get out of that experience is a tremendous sense of empathy for these families and for the siblings and for these individuals that they're working with that cannot be replicated in a university classroom nor can it be replicated in a school-based practicum, for example. So when they read in a textbook why a family that has a child on the spectrum might be hesitant to go into the community, to go to a grocery store, or to go to a restaurant, they can see that in real time when they're in the dining room on the cruise ship or when they're at the beach assessing families. They can truly understand through experience and not just through what they're reading. That lesson in empathy is absolutely the most important thing that my students gain when they participate in supporting the staff who are providing that level of service for these families.
AotS: Do you have any other words of wisdom for families out there who may be in that same position where they still haven't cracked the vacation code? What would you say to them?
Dr. R. Potter: You know, I think having an opportunity to interact with families who have experienced this could be beneficial. Whether it's listening to a conversation like this, or interacting with other families on Facebook who've experienced Autism on the Seas, or even calling the office and asking for a referral to another family. There are so many families who have been touched by this experience who have said, "Please feel free to have the hesitant family call me."
And I think the organization is happy to make those connections. If somebody would feel better talking to somebody who's experienced a cruise, while still recognizing that every family is going to be different, it's potentially very helpful.
One of the things that's so great about Autism on the Seas is the cruise experience itself can be individualized based on what a family needs or doesn't need, or what level of service they want or don't want, or what a child's interests are or aren't. That individualization I think really is what makes this so much more than just a group organized cruise event.
AotS: And I think your own son has made some big strides, right? The last cruise you took was just this past March and you gave him some pretty liberal freedom, right?
Dr. R. Potter: I did and that was my first time doing that. It was probably his sixth cruise, all with Autism on the Seas. That was my first time saying, "You know what, I'm going to let you go use the restroom by yourself when we're at dinner or I'm going to let you stay in the pool while mom walks down to one of the shops for a few minutes or I'm going to let you go to the arcade for an hour by yourself."
Was I a little nervous about it? Sure. But I know that he's safe and I know that he feels a level of comfort on cruise travel because he's experienced that. I also know that at some point he's going to come across somebody in an orange shirt that says Autism on the Seas staff and he knows those are his go-to people. And if he has a question, he can go to them. He knows that he can go up to any of the cruise ship staff wearing a name tag if he doesn't know where he is or he has a question, and he can do that and have that freedom.
And you know what? He did fantastically. While I was nervous giving him that level of freedom, it was the best thing I could've done for him.
AotS: So has any of that carried over? Has any changes in behavior carried over post cruise?
Dr. R. Potter: I would say maybe more for me than for him, which is good, right? So I think in my own behavior and level of trust, he didn't get treated with a great deal of trust, so it has changed in our home and in our community what I'm allowing him to do. I will now leave him at home for a longer period of time while I'm running errands. I will allow him to, and this was a huge one for me, use the microwave when I'm not in the house. Now, I can guarantee you the first few times he had to text me afterward to say, "I finished using the microwave and the house isn't on fire," because I'd be sweating bullets.
I'm starting to allow him to experience that independence so that he can practice that and learn that and the cruise was an opportunity, not only for him to demonstrate that, but for me to kind of let go in a situation where I knew I had support if I needed it from the Autism on the Seas' staff. I knew he was going to be safe and I knew I had those resources available to me. So, I think my behavior may be changed more than his.
Frequent Autism on the Seas cruiser, Sharon Ayalon, gives us all the reasons why her family cruises with AotS and how each experience has resulted in therapeutic advancement in her son, Ben, who is on the autism spectrum. The Ayalon family took their third cruise with us this past January and they've booked their fourth special adventure for February 2020.
LISTEN to our interview with Sharon Ayalon
Aots: Tell us a little bit about your family?
Sharon: Well, there's me, of course, my husband, and I have a teenage daughter, Eden, she's 15, and my son Ben, he's 11. Ben is on the autism spectrum. During daily life, he's mid to lower-end of the spectrum, but for some reason, on a cruise, he becomes high functioning! It's amazing.
Aots: How does that manifest? Is he more verbal?
Sharon: He has a few words, but if you start talking to him about cruises, all of a sudden he starts talking more. He seems motivated to talk. First of all, he loves the staff. He loves the attention from the staff, and they really get him engaged with all the other kids, and activities. It's really a phenomenal experience for him to be able to socialize with other kids and just connect. At this point, we've already booked other cruises with the same families because our kids have gotten along and we've also bonded with the parents. We remain in touch all year long.
AotS: Was Autism On The Seas the first real vacation you were able to take with your family or had you done other things?
Sharon: We go to an autism retreat that's for Jewish families once a year. But we've never tried a cruise. We've never attempted anything like that until we discovered Autism On The Seas.
AotS:What was it about your exposure to Autism On The Seas that made you confident enough to try it?
Sharon: The first time we went, I was extremely nervous. I didn't think that we could do this at all. I'm like, we're going to regret this. What are we doing? But all of a sudden, when you see the staff, how wonderful they are with your child, and it's like, wait a minute, we can do this. And then, as another day goes by, you're like, wait a minute, we're having fun. And then you're like, what, it's over? Wait, I need another one. And that one's over, I need another one. It's habit-forming.
AotS: So, did you have time alone to reconnect with your husband and do stuff that you normally don't do?
Sharon: Well, back home we never get to go on dates. It's a rare, rare, occasion. All of a sudden on sea days, it's like we'd have two dates a day. It was phenomenal just to be able to sit back and relax together.
AotS: How about your daughter? Did she fit in well on the cruise?
Sharon: Well, my daughter is a teenager, so you put her on a cruise ship, and you won't see her again until you disembark, basically. All the typical teens hangout at the Teen Club and go to dinner by themselves. Every now and again, I'd run into her.
Actually, I think the big difference for Eden was that she felt that we were not so different. Our family didn't stand out on the AotS cruise. Many times, it's embarrassing when you're a different family, but when there are other families around that are similar to yours, it's like, okay, we're not the only ones. Then you feel a bit more comfortable. She wasn't so embarrassed.
AotS: Yes, we hear that a lot. So what about the various activities on the ship? How was that? How did Ben do?
Sharon: Well, first of all, the biggest thing is, my son will never sit in a restaurant, but on the cruise that all changed. He sat through over an hour every night at dinner. That is something, I mean, I don't know how they did it. It's magical. I didn't think my son would go into laser tag. I didn't think he'd sit and watch shows and all of the other activities he did with the staff. We were amazed and so delighted.
AotS: You took your last cruise in January, right?
Sharon: That's correct, yes.
AotS: Tell us about that. Where did you go? Would you recommend that particular cruise?
Sharon: Okay, we were with Royal Caribbean, because we had learned from a staff member on our first cruise that they are the most accommodating for our families. And I truly felt that with every cruise I've been on with Royal, that they really get our families, and they go out of their way to make us comfortable. The Independence was just newly renovated when we went, and it was beautiful. They had a lot of great activities for the kids, and it was a great ship. Equally important, there were enough activities when my teenager was bored, which was just as important to me as my son.
We went to Cozumel and Costa Maya. I love Mexico, and Cozumel, in particular. I highly recommend that all parents do the tequila tasting while the staff is with their kids in the water. Nevermind that it's 10:00 AM, it's Mexico, you're allowed to drink... And you get to do stuff that you would never do. I mean, where would I go to a tequila tasting at 10:00 AM, with my husband while my child's on the beach with staff? It's amazing. I never thought that was something we could do.
AotS: Did you do any excursions, special outings or anything like that?
Sharon: In Costa Maya, we took a taxi to one of the local beaches. My son just loves the water, so we rented a kayak there. It was included, actually, with entrance to the beach. I think it was like $20 for all four of us, and it included chairs, it included a kayak rental, and an umbrella. I mean, we just spent all day on the beach and kayaking. My husband took Ben out and he loved it. It was just a nice day on the beach in Costa Maya, because the port was really crowded.
I think the January-February timeframe is ideal to visit this destination because kids are back to school and everyone is back at work, so it's not overly crowded.
In Cozumel, we went on the group excursion. We took vans to the beach club. First of all the vans themselves were an attraction for our son, he was giggling on the whole ride there. And then once we got there, of course, my son loves the water and they have a nice pool area, which is great because some of the kids didn't want to go into the ocean. It was great because there's a nice restaurant there if people want something to eat. And most importantly, there's tequila tasting.
AotS: So, what about after the cruise? I know Ben reacts really positively when he's on the ship. Is there an afterglow? Does he hold onto any of those positive behaviors?
Sharon: He becomes way more verbal because he starts talking to all of his teachers and anyone he can about his cruises. He's a child who doesn't talk a lot, but then once you mention cruise, he'll start telling you about everything he ate, because food for him is just as important as the activities.
AotS: So Ben liked the food? He's not picky?
Sharon: He is picky, but there was a nice plate of olives waiting on the table every night for dinner. And he really loves unlimited ice cream, which I'm sure every child does.
AotS: So, if you were going to give advice to somebody that's getting ready to take this on as their next adventure and they're a special family like you, what would you tell them?
Sharon: Relax and enjoy it. It's going to become habit-forming. The staff is phenomenal. You're going to want to take all the staff home. They're just so amazing with our children. It will be the best experience of your life. Just enjoy, because you're going to get time with your significant other, time to feel like a normal family on vacation, which is a very rare opportunity for families like us.
AotS: Thank you so much for sharing your story with us.
Chris Miller lives in Katy, Texas, with his wife, Jana, and two sons, Joseph (12) and Carson (8). Chris tells AotS about his family’s first cruise with Autism on the Seas and how he became inspired to start Autism Anywhere, a Youtube channel that offers travel tips and advice to families with special needs children. Chris features first-hand experience by sharing his own family’s vacation adventures with their special needs son, Joseph.
According to Chris, Joseph’s autism is quite severe. He's mostly nonverbal, but has some echolalia, where he'll repeat things from TV shows, etc. Chris says, barring the occasional meltdown, Joseph's a great kid.
LISTEN to our podcast interview with Chris Miller, AotS cruiser and vlogger at AutismAnywhere.com
AotS: Tell us about your new YouTube channel and soon to come website, Autism Anywhere. Is your mission to share your family's experiences so other special needs families can overcome their apprehensions about travel?
Chris Miller: Exactly. We're big proponents of getting out with your child. We know lots of people who have kids on the spectrum and they have become virtual shut-ins. They never get out, they don't think they can go out to dinner, they don't think they can go anywhere. We believe, the more you get out, the more you take your kids out and let them experience things, the better they'll be able to cope with life. We just want to share the tips and tricks that we've figured out along the way and just share our experiences going to new places, such as the Autism on the Seas cruise.
AotS: Okay. Tell us a little bit about how that all played out. How did you decide on an AotS cruise for your first time?
CM: Well, first off, we live close to Galveston, which is the port we departed from. A couple of years ago, we participated in an Autism on the Seas ship tour, which is designed for families like us who have never cruised with their special needs child before. We were able to go on board, meet some of the volunteers that were available at that time. We just got a good feel for how things were handled, got to meet people, and realized, hey, this is something we can do!
So, we finally got together and thought, "Okay, let's just go ahead and do this." We booked the cruise, and when we did that, we started researching heavily into what we would need to bring, and so forth. One thing we always do before any trip is just start watching YouTube videos on everything. We're big fans of YouTube, obviously.
We made sure to watch it with both of our boys so they could see what the ship looks like. There are lots of virtual ship tours, so we searched specifically for Royal Caribbean’s Vision of the Seas, which was the ship we were sailing on. We just watched those videos repeatedly for a long while. Then, around that time, we decided, you know what, it would be nice to have videos of our experience on an Autism on the Seas cruise. So we thought, "Okay, let's just do it." We'd been toying with the idea of developing a vlog, and the cruise was the perfect opportunity to get us started.
AotS: How was Joseph's experience? How did he interact with the staff?
CM: Everything was excellent. The only issues were fairly typical with Joseph needing to adjust to sleeping in a new place. The first few nights he settled down and got to bed a little later than usual. But the staff was excellent. Fortunately, the way it's structured is, you meet the staff a couple of times before you drop off for respite, so Joseph got to know a few of the volunteers at the sail-away party. They also do a private one-on-one meeting, so we were able to get to know each other and he was able to get comfortable. It was a very smooth experience all across the board.
AotS: Did you take full advantage of the respite?
CM: Every time it was available, we took good advantage of it. We know that it's a rare thing to come by in the autism community. There were lots of shows and activities on the ship. There are always at least 10 things to do on a cruise. In fact, we did a wrap-up and we were discussing that maybe next time we do a cruise we might want to schedule some naps, because there's just so much stuff to do that you can just go, go, go, go.
AotS: It’s great that you could enjoy being carefree for a little bit and reconnect with your wife and your younger typical son, Carson, yes?
CM: Yes. Oh, Carson enjoyed respite, too. He went in with his brother to the respite times more often than not. There were a couple of instances where we took him to a show that Joseph wouldn't find interesting, but he loved it. He was actually asking, "Hey, when's respite?" and one of the occasions was at a beach. You can't beat that?!
AotS: How did Joseph do with the scheduled private activities for AotS cruisers?
CM: Joseph actually got up a few inches on the rock climbing wall, but they certainly didn't pressure him. He got the straps on and so forth, the protective gear, and he would just kind of walk up to the wall, look at it, and get his feet on the first one, and then back off and then look at it. That was a good experience, because since they had a dedicated time for just us families, he was able to do it at his pace. There weren’t people breathing down our necks like, "Come on, hurry up."
Oh, and swimming. He loves swimming, so that was great to have that available. We did that every sea day. They had a swimming time planned with staff. It was nice, because normally my wife or I have to be with him 24/7, and so the staff was able to swim around with him, as well. That took some of the pressure off. He loves swimming, so that was something he really enjoyed.
AotS: Before we let you go, give us a few of your tips. If you were going to advise a fellow traveler and parent in your situation, how would you tell them to prepare?
CM: I would say you know your kid better than anyone. One thing, when you're in the autism world, you become an expert on your own child. So make sure that you have the items that they need to calm down and such, because when we would have some downtime in the room, he would go to his iPad or we would bring dot to dot books, because he likes crafts and activities and coloring. There were times that we would bring some of his own items to the respite and drop those off with him, just in case he didn't like the activities there. That way, they had a backup if something was wrong. That helps.
We brought some items just to make the cruise room a little bit more like home, like certain things from the bathroom and certain stuffed animals and things like that, just to help ease the transition. That helped, too. Just be prepared, essentially. Make sure you have backup batteries for iPads!
The other thing we did in preparation for the cruise was to create something of a social story by using those Youtube videos. It certainly helped Joseph to see the ship, see what the rooms looked like, etc. I do recommend that people start as early as possible. I see people in the typical world do things, like surprise vacations, where it’s like, "Hey, we're going to Disney World!" For kids on the spectrum, that's not something you want to do. You want to, the second you know that you're going, start working the thought into everyday conversation.
AotS: So, are you going to cruise with us again?
CM: Yes, definitely. We're going on an AotS cruise to Key West and CocoCay next summer.
The Ansley family on a Royal Caribbean cruise to St. Maarten
"Take a chance because once you get to that port and see those orange t-shirts, you'll know it's going to be okay. You're making friends at first, but then you have family. That's all there is to it. Somebody on that cruise is going to connect with you. They're going to get you. They've been there, they've done that, and it's all going to be okay. Everything's going to work out. You're going to see an improvement in your child. You're going to have a new addiction."
Kim Ansley and her family are veteran Autism on the Seas cruisers. Since 2015, they've sailed with us three times and they are getting ready to leave on their fourth cruise in just a few weeks. Not only that, they've also booked a fifth cruise this December as a 10th birthday surprise for their son, Jakob.
We chatted with Kim about her family's experience with Autism on the Seas and how Kaleb, her older son with special needs, found the adventure.
Listen to our interview with Kim Ansley
Autism on the Seas: Today we're talking to a really good friend of ours. Her name is Kim Ansley and she's from Brazoria County, Texas. Tell us a little bit about your family. I know you have two sons. Kaleb is 14 and Jakob is going to be 10 this year, right?
Kim Ansley: Kaleb is a typical 14-year-old boy, attitude included, except he's on the autism spectrum and doesn't speak, but he uses his iPad to communicate. His obsessions are swimming and ice cream. My son, Jakob, is a neurotypical kid and he likes to say that his older brother's job is to irritate him, but they love each other very much.
AotS: How did you first encounter Autism in the Season? What made you take your first cruise back in 2015?
I actually received a grant from an organization called Diamond Wishes and once I got the grant, we set sail in about two months. It was the scariest two months of my life. The day of the cruise I cried from my house to Galveston, which is 45 minutes away, because nobody would understand that I would be lost in my room. I was afraid Kaleb wouldn't want to participate and I would starve to death. But I learned as soon as we pulled in and saw all those orange balloons that it was all going to be OK
AotS: Was there anything really surprising that Kaleb did or participated in?
Kaleb connected with the ice cream machine (laughing). He loved it. During pool time, I'd see him with the staff and he'd make them follow the leader. I noticed he had their hands up turning around in circles with their eyes closed, and then he went off to the ice cream machine. Luckily, the staff knew and they were already following him. But he amazed me.On our first cruise, one of the staff members was a speech therapist. Knowing that Kaleb was non-verbal, she gave us some invaluable advice that I preach to others in my shoes to this day. She said when you're working with Kaleb's speech, you need to repeat something to him three times: First, whisper in his ear; second, say it where he can see it, and third, cup his hand over your mouth, so he can feel it. After we got off that cruise, Kaleb started verbalizing more sounds - It worked! That's one of many unexpected gifts we received from our Autism on the Seas vacation.
AotS: Did you opt for the one on one staff assistance?
For our first two cruises, we didn't, but we decided to try it on our most recent cruise and it was amazing! It was like having a sister with me the whole time. We really connected; we talked and we got along. It was the extra-extra support that I needed because she was there for me and my husband, but also there for my kids and basically Kaleb to make sure he got everything he needed and wanted.
AotS: You spent some time walking around Nassau with Kaleb and another family. Did he have any meltdowns?
Kim Ansley: He was good, which surprised us. He was willing to branch out. It's just, I don't know. The staff has a way to get him to, whether it be touch, a different food or a different feeling that he normally doesn't touch, but the staff just has a way to encourage him to do more.
AotS: Anything else you'd like to add for folks who may not have sailed with us yet?>
Kim Ansley: There's plenty I would like to tell them. Take a chance because once you get to that port and see those orange t-shirts, you'll know it's going to be okay. You're making friends at first, but then you have family. That's all there is to it. Somebody on that cruise is going to connect with you. They're going to get you. They've been there, they've done that, and it's all going to be okay. Everything's going to work out. You're going to see an improvement in your child. You're going to have a new addiction.
Many of you are curious about our Vacation Grant program for families with special needs. We had the pleasure of speaking with Michelle Collins who is an Autism on the Seas Foundation grant recipient. She tells us her story and how she and her teenage son, Riley, spent their special vacation in Grand Cayman and Mexico with AotS.
LISTEN to our Special Vacation podcast interview with Michelle Collins
Michelle resides in Norman, OK, with her sons, Kade (28) and Riley (15). Her younger son, Riley, was diagnosed with autism at an early age. According to Michelle, Riley is highly intelligent and outwardly typical in every respect, but he struggles with simple activities, like dressing, brushing his teeth, and socialization with typical peers.
AotS: You took your first cruise with us in 2017. How did that come about?
Michelle Collins: My sister actually found Autism On The Sea back in 2015 and sent me the link. I was looking at it and thinking about it and I finally applied for a grant in 2016, and I got accepted.
AotS: For folks who are not familiar with Autism On The Seas Foundation, it is Autism On The Seas nonprofit arm and through that organization we fund grants that assist folks who may be financially strapped or going through some economic challenges in their life, but they really need a vacation and can't quite afford a trip on their own. We're really happy to hear that you were able to take advantage of that. So, tell us a little bit more about how it worked.
Michelle: After you apply, when they have funds available, they'll send out a list of a couple of different cruises and cabins to pick from. They distribute the grant funds that they have and you match it with the amount you can afford. There are different cruise fare ranges. I picked one that I knew I could afford. It was very reasonable.
AotS: Where did you go? Michelle: Riley and I cruised out of Tampa to Grand Cayman and Cozumel for five days. Autism on the Seas and my whole family helped us make this vacation dream come true. My oldest son, Kade, donated and my mom and dad donated. They bought one plane ticket and I bought one plane ticket and then my sister and my brother-in-law bought us a snorkeling excursion.
AotS: Tell us a little bit about Riley and his condition. What does he typically like to do and maybe some of the things that you were surprised that he did on the cruise?
Michelle: He is comfortable with things he's familiar with. He likes to swim. He likes to play mini golf, which was awesome because the ship had a mini golf course. They also had a rock climbing wall, which he climbed, and he's afraid of heights! He did it three times and each time he got a little bit higher, which was awesome, because he kept going back and he kept trying to go higher. So, that to me was wonderful.
AotS:: That's great. So, we were sharing a little bit before we actually started the formal interview and you were describing Riley and his day-to-day challenges. One of the things that you pointed out was, for all intents and purposes, if anybody were to see Riley, they'd think wow, here's a really smart, good looking, young man. He looks like a typical teenager, but where you face the challenge is, some of the things that you would expect would be really easy for him to do are the biggest challenges, right?
Michelle: Yes. Hygiene, dressing, communication, he does not communicate the way I would say a 15-year-old would. He still gets verbiage backward. He still says I'm hot when it's cold out. I'm cold when it's hot out. It's those little things that get frustrating.
AotS:Okay. So, some of the social interactions are challenging. When you decided to take this trip, were you a little bit worried about what he was going to do and how he was going to interact with the other kids on the ship? Was that something you were thinking about?
Michelle: It was. It really was, because I wasn't sure how he would do, but it wasn't really a big issue because AotS had so many things planned for us, like pool time. The first cruise that I took with Autism On The Sea, we had the staff with us. They have such great planning and such great staff that there's always something going on for us to do.
AotS:I imagine that the staff probably stepped in and maybe filled those gaps where you might have been worried about the socialization piece.
Michelle: They really did. He gets along great with other kids that have disabilities. It's the neurotypical kids that he usually doesn't get along great with at his age level. So, the younger ones he gets along pretty good with because they're on his level sometimes. But at his age level, not so much. So, with his peers, I wasn't that concerned. Knowing we were going to be with other like-minded people and then have other parents that knew what could happen, that might happen. It was a little bit easier to go because I knew that they've been there and they've probably done that.
AotS:: What would you say are the one or two things that really stand out in your mind that made that particular cruise with Autism On The Seas special and the right decision for you?
Michelle: The way Riley took to cruising. He loved it. I mean, I thought he would because he loves water. He grew up at the beach and he was my water baby, but he just loved being out on that ship. He loved just looking out at the ocean. He just liked walking the ship. We had to find where everything was and where all the exits were. That's his way of adjusting. And then he found the "putt-putt". I think we stayed at the mini golf for a good 30-40 minutes and that was fun. We found great things and he had a ball. He met some kids and then all the staff was amazing and he was just like, okay, these are my people. That's what he said to me, "These are my people." and I said, yes they are.
AotS:That's wonderful. So, if you were going to give advice to anybody who's thinking about this but hasn't booked it yet, what would you tell them?
Michelle: Do it. I did the cruise with staff, and we also did a snorkeling excursion in Grand Cayman. I ended up booking a one-on-one AotS staffer for the excursion and it was the best thing I ever did. We had rough currents that day and so it was kind of nice having Danielle. She ended up staying on the boat because Riley was having some problems with his mask. So, he kept getting on and off the boat and without her, that would've been me getting on and off that boat the whole time. She ended up just staying on the boat and helping him while I stayed in the water when he wanted to come back in.
AotS: I'm glad that you shared that because you had the best of both worlds. You didn't opt for one-on-one throughout the whole cruise, but you made a wise choice when you went on the excursion. It was a little bit hard to handle all of those things going on at once and enjoy yourself, so I think that was a good option for you.
How and when did you get involved with Autism on the Seas (AotS)?
I first learned about Autism on the Seas nearly three years ago when some friends and co-workers shared their experiences as professional volunteers. Due to an auto accident, I was unable to truly get involved until October of last year (2017).
How are your educational and career goals supported by what you do for AotS and vice versa?
From an educational standpoint, I am currently working towards my Master's degree in Public Health with a specialty in advocating for people with mental and physical disabilities. I also currently work in the field of behavior therapy as a registered behavior technician (RBT). The majority of children that I work with are on the autism spectrum. I believe in the services that AotS provides and their advocacy on behalf of families with special needs and their right to enjoy a vacation just like typical families.
Describe your role and experience as an AOTS staffer?
My role with AotS is a voluntary position with a primary focus on providing guest families on the cruise the best possible experience with their special needs child. I want the families that I assist to create incredibly memorable moments that they can take back with them.
Why do you do this?
I volunteer with AotS for many reasons. I believe in the services that AotS provides and, as I mentioned, I support their advocacy on behalf of families with special needs children and loved ones who deserve to enjoy a family vacation. On top of that, I love what I do. I love working with the kids and families. Seeing the new experiences they enjoy is very rewarding. The other gratifying reason is being able to show the parents all the wonderful things their kiddos are capable of doing. We tend to get kids to do things that the parents never thought possible, like climbing a rock wall, surfing on the FlowRider or floating in the air on the iFly.
Can you share some examples of connections you've made with families on board AotS cruises that have made a lasting impression?
One of the sweetest families I have ever met is the Fishers. They were one of the families I worked with on my first cruise this past February. They were very wholesome and participated in any and all events. They also made good friends with other families, which is extremely rewarding for me to see. It's extra special when families like this come together and share a common bond. It's not unusual for lasting friendships to begin on an AotS cruise.
Rupa Nadkar, Behavior Analyst and AOTS Professional Volunteer
Our guests consistently tell us that our professional volunteers are amazing, and we wholeheartedly agree! They are our secret sauce. Talented, educated, committed, caring, bright, eager, compassionate, patient...the list of adjectives that describe these young professionals goes on and on. In this post, we'd like to introduce you to Rupa Nadkar. She's been part of "Team Orange" for just over a year now and we think she's terrific, and so do the families she has touched on their special vacations.
How are your educational and career goals supported by what you do for Autism on the Seas and vice versa?
I am a Behavior Analyst at Devereux PA CIDDS working with clients ages 6-21 with primary diagnoses of Autism. As I plan to expand my education by pursuing my Masters in Education, AOTS has supported my experience in the field. AOTS also supports my career by providing knowledge on a different aspect of families' lives. Many times, as educational professionals, we only see how having a child with Autism effects a family educationally. Working with AOTS has brought to life families' lives outside of just schooling.
Describe your experience as an AotS Staff Volunteer?
My experience as an AOTS staff volunteer has been life-changing. I have been able to combine my greatest passions in life: travel and working with children. AOTS brings spontaneity, love, and happiness into my life. I have met amazing families and staff members across the country that I will stay friends with for a lifetime.
Why do you do this?
I joined the program because I genuinely enjoy each experience that I've had with AOTS. It is fulfilling and enjoyable at the same time. Each experience is different and I feel as though I grow as a person with each new family cruise encounter.
Can you share some examples of connections you've made with families aboard AOTS cruises that have made a lasting impression?
When I am assigned to a family that options for 1:1 dedicated staff support, the connection really goes deep. I am able to spend the entire cruise with their special needs child and the whole family, which makes me feel like I'm on a real family vacation and part of the guests' personal experiences. Having that intimate access to a loving family dynamic is moving. I still stay in touch with those families via social media and texting.
What are some of the most interesting, unexpected or amazing results/experiences that you have witnessed among AOTS guest families and special needs children?
On a recent cruise, one of the special needs guests used a wheelchair due to challenges with gait. We were able to support and encourage the individual to do things that the family never thought possible. This included activities, such as roller skating and ascending the rock wall. To see children with special needs whose expectations related to participating in onboard activities are low, then rise to the challenge and enjoy a new world of experiences and possibilities is particularly heartwarming.
This past June, the Lack family of Tempe, Arizona, joined dozens of extended family members on an Autism on the Seas-staffed Disney Wonder Cruise to Alaska. Their adventure was filled with surprises and adventure, including one-on-one time with Mr. Mickey Mouse, a helicopter ride, and dog sledding.
WATCH our interview with Rachel Lack, mom to Henry, documentary filmmaker, and creator of the new docu-series, "Across the Spectrum"
AotS: We’re intrigued with your story, not only from a guest perspective and your vacation with us, but also what you're currently working on professionally as a documentary filmmaker. I think folks who listen to us would really find it interesting. Why don't you tell us a little bit about your Across the Spectrum project?
Rachel Lack: As a filmmaker, when my son was diagnosed with autism almost four years ago, I was looking for documentaries and there wasn't really a lot out there about what happened right at the beginning when your child is first diagnosed. So, I thought, "I need to film this, and I need to film this for other people so I can help other people as I would have wanted to have been helped." When you get the diagnosis, a lot of times the doctors don't tell you anything other than, "Your child has Autism Spectrum Disorder," and maybe offers a few pamphlets. They don't really tell you what to do afterward. You're kind of hit with this tornado of emotion and helplessness.
I turned to my camera, and I filmed myself throughout. Especially the first year, I filmed myself a lot talking about how I was feeling and crying a lot, because that's what you do, especially in the beginning. But I wanted to also show people that it's not a death sentence. It gets better as it goes on. There's help. So I filmed myself, and I found four other families in the Phoenix area. I live in Tempe, Arizona. We are following five kids in Arizona. I've been skyping with three families in Massachusetts. We're following these eight kids, from the time they are diagnosed through adulthood, because it doesn't end when the kids are adults. It's going to be a long series. I'm learning a lot. We're almost four years into this.
Aots: Just so folks understand how long you've been doing this, your son, Henry, who's on the spectrum, is six years old now. He was diagnosed when he was two years old. Correct?
Rachel Lack: Yeah. Almost three. So he was diagnosed on October 14th, 2014. So two months from four years, and he'll be seven in November.
AotS: If folks want to just check in to keep track of your progress, particularly if you end up streaming your program on Netflix or some of the other streaming outlets like that, do you have a website?
Rachel Lack: Yeah. Right now our production company is Purling Place Productions, and the website is purlingplace.com. Right now we're still working on that, because we are starting the first season of editing. It took me a few years to figure out what direction I wanted to take with this. First, it was going to be a documentary, and then I realized how much information there is. It can't be just one documentary. I realized that it needs to be a series.
As I was filming these kids, I was like, "We need to film them throughout their whole," ... and when I met these families, I said, "We might be filming you guys till the kids are passed 18." And everyone was on board. It's great. I've been filming updates every six months with the kids. The ones in Phoenix we do some play dates with the kids. We've got a lot of footage of the kids together playing, parallel playing.
AotS: Yeah. There's a 360-degree view of every aspect from the parents' perspective, through the child's eyes. I think that's wonderful. I wish you luck with that. Okay. Now we want to talk about your vacation. You went to Alaska, right?
Rachel Lack: Yes.
AotS: Back in June? And you went with your parents, which would be Henry's grandparents. Right? You were celebrating their 50th anniversary?
Rachel Lack: Their 50th anniversary. Yes, and my three sisters came and their families. Henry was the only autistic child. My niece and nephew stayed with Henry and played with the AotS staff – it was great. Our experience was a little different than I think the average family would have, because we were the only family with an autistic child. We had two team members for Henry, basically, and then my niece and nephew. But they were really there for Henry to make sure Henry was okay. It was amazing. And Henry bonded with both Sandy and Jamie right away.
AotS: How did you initially find out about Autism on the Seas?
Rachel Lack: From doing the documentary I have become really involved in the community. I think from a Facebook group somebody posted about Autism on the Seas a couple of years ago. I thought it was really cool, and I started following the page. When my parents first told me about the cruise, they came to me first, because they wanted to make sure I was okay with Henry being on a cruise, being non-verbal. Since I knew about Autism on the Seas already. I said, "That's perfect. I know a company that we can contact that will help us." I just contacted them right away.
AotS: Tell me a little bit about Henry. Did you have any kind of concerns before taking the trip?
Rachel Lack: Yes. A lot of concerns. We have flown with Henry a lot, and we travel with him. I grew up in Toronto, Canada, so we go back and forth in the summer to Toronto, but we'd never been on a huge ship like this. I don't even think Henry had seen a ship. He had seen a ship on television, but he'd never seen one in person. We had no idea how he was going to be on the cruise, how he was going to react. You're nervous about large crowds. You're nervous about trying to get on the ship. That's the first thing that you worry about is the crowds getting on the ship, the waiting. They don't wait.
Henry loves trains. He will wait in line for a train, because he knows he's getting on the train. Anything else, he doesn't understand what he's waiting for. So he's not going to wait. There's a lot going on in your head as you book these trips, and you're like, "What did I just do?" But Autism on the Seas was amazing. Sandy was our team leader, and she contacted me a month before. Three weeks before we had a phone call. We talked for an hour. She had been on the Disney Wonder before, so she knew the ship and she knew Disney. Disney's a little different than Royal Caribbean, because they don't have the connection that Royal Caribbean does. But we had an amazing trip.
AotS: Tell me about some of the highlights with regards to activities on the ship. Did Henry do anything different that surprised you? Did he get involved in things that he may not have normally taken part in?
Rachel Lack: Everything surprised us about this. From the minute we stepped on, Autism on the Seas was there right away when we got there. They got us right through the lines. You see Team Orange, and you're like, "Yeah." They're right there in Orange. They had orange flags and they got us right on the boat. It only took about a half an hour for the whole thing.
We weren't sure about how he was going to be with the characters, because on the cruise they have got all the Disney characters. Right away Henry saw Mickey and ran to him. Henry tried to grab his nose, so Mickey was then touching his nose, then Henry was touching Mickey's nose. They were so great with him the whole time. Any of the characters that we could meet we would go and meet, even the characters he didn't know. Captain Hook? He'd never seen Peter Pan, but he gave Captain Hook a high five. It was amazing. So we were like, "Okay. We gotta go to Disneyland now."
He didn't go on the waterslide, but he loved the pool. One of the excursions that he absolutely loved that we were a little worried about, we knew he would have fun, but we weren't sure was a helicopter trip to a glacier. Then we went dog sledding on the glacier.
We had to practice with headphones, because he doesn't like anything on his head. So we practiced for like three months before the trip having him wear headphones. And he was great. I think he was so excited to be on the helicopter.
We weren't sure what he would be like with the dogs, because we have a cat, and we don't have a dog. He just absolutely loved the sled dogs. It was the best excursion that we could have ever done.
AotS: I'm going to go out on a limb here and assume that having a child on the spectrum, you probably don't get to go out and have me time or alone time with your husband, right? Did you get to enjoy that on the ship? Did you take advantage of the respite?
Rachel Lack: Oh yes. We did. We had about three hours of respite a day when we were sailing. Then on port days, we had one to two hours at night. It was great. They had movies on the boat. I think we went to see Solo, my husband and I. I was able to spend time with my older cousin, my older niece and nephew who are 16 and 13. That was great. Because there were so many of us we could do that. The respite was amazing. You felt like you were a normal family again. You could actually sit and relax for an hour, and you know the people are great. People know that you can't just leave your kid. If you go to a resort or something you can't just leave them in childcare. You can't just leave them with anybody, especially a non-verbal child who can't tell you when something’s wrong. But you feel so comfortable. Henry just loved the staff from the very beginning. Henry had a connection with Sandy and Jamie. It was great. We felt very comfortable. And my niece loved going there too. She loved going with them.
AotS: What advice would you give other families who may be thinking of an Autism on the Seas vacation?
Rachel Lack: You're going to be nervous, but know that you've got these friendly faces that are going to meet you right at the beginning. They are going to take care of you and your child all the way through. They took care of our whole family, not just Henry and Steve and I. They took care of everybody that booked with them. I know you're hesitant to book it, but It's worth it just to get on and off the boat first. That was my worry. Too many people and the meltdowns that might happen. We had no idea how he was going to react. Having these friendly faces right there to greet you at the beginning, because you're stressed -- It's worth it.
You're going to have a great time. Just know that there are people that book it, and then they book immediately the next trip afterward, and there's a reason for that, because you feel relaxed, the kids have fun, and you have fun.
The Bennett family from West Palm, Florida, took their first Autism on the Seas cruise on Royal Caribbean this past June. Their pre-schooler, Camden, who has autism, sailed with the family to Nassau-Bahamas, and according to mom and dad, his socialization and interaction with staffers and other kids surpassed their expectations on a daily basis.
WATCH our interview with Mark Bennett
Autism on the Seas: Give us the highlights of your trip.
Mark Bennett: This was our first cruise, not only with Autism On The Seas, but also the first cruise for Camden. So this was sort of an experiment for everybody. We went on a five a day, four-night cruise, just to kind of keep it a little shorter to see how he would do. We opted for the one-on-one staff experience with a remarkable staffer, Patricia Brown -- She goes by PK. She contacted us ahead of time to introduce herself to Camden via FaceTime, so he wouldn't be surprised when we met on the ship. We prepped Camden by showing him lots of videos on the Royal Caribbean website. Essentially, what happened was the whole experience out-performed any expectations that we could have ever had. We arrived, and all the girls in orange were there at the pier. We boarded quickly and the Autism on the Seas staffers quickly went from strangers to best friends almost instantly. They're so welcoming, so amazing. I couldn't have asked for a better experience. All of the fears that we had were put to rest very quickly, and we're going to make this an annual experience.
AotS: That is so kind of you to say. I know that our viewers are really going to take a lot from that. Tell us a little bit about Camden, specifically. How does autism manifest in his behavior? What are some of the things that you were a little anxious about in terms of taking this trip?
MB: Camden was diagnosed at age three, and his autism primarily affects his social interaction with other people. That has gotten a lot better over the years with ABA therapy, but we wanted to expose him to other children on the spectrum, and not just his classmates in preschool.
One of our greatest fears was elopement. That's a pretty common issue with autistic children, and it was a big problem for our son. We've had at least one terrible incident where we lost him for a couple of minutes. So there is a fear of elopement and losing Camden.
The cruise ship itself generates fears of, obviously going over the rail. There's a lot of pools and Camden is drawn to water. So there's the fear of the water. All of those fears had been thoroughly thought through and discussed with AotS and PK. So it became very obvious that our fears could be put aside for the cruise because that's just how great you guys have been with him.
AotS: Had you taken a vacation since Camden was born?
MB: Yes. Last year in April we went to Disneyworld. We were still living in Georgia at the time, and we drove down to Disney and spent a few days there. We had kind of a hit and miss experience there. Camden was more obsessed with riding the monorail and watching the automatic doors than he was any kind of ride or characters. It was hit or miss. I think for my wife, Thelma and I, it was not as relaxing as a vacation should be. I know I'm sort of the super helicopter parent, and so we were walking around big crowds at Epcot Center and you're afraid of him running away, you tend to not relax as much. That was sort of the issue there. I don't know how he would do now, but that's the advantage of Autism on the Seas. They allow the parents to really relax.
AotS: How did you and Thelma take advantage of the respite?
MB: To honestly tell you, we didn't do a whole lot other than relaxing. We went around and enjoyed the ship, enjoyed the pools, had a drink. Honestly, we didn't know what to do with ourselves. It was a fairly new experience to be on a vacation and not worry about our son. We took part in the excursions, went to the beach. It was nice to be at the beach and not constantly have one of us watching him. PK was there to be involved. They all came with us on the excursions and were very, very involved. So, we were able to relax and get some sun and have a drink, enjoy the music and just do the simple things that people do on a vacation all the time.
AotS: You mentioned that one of the things, in particular, that sticks out in your mind about Camden is the socialization piece. Was there anything that moved you during the cruise? Did he do anything new or different that you were sort of surprised and delighted with, that he may not have done outside of that experience?
MB: You know, he was interacting with other families and other children a lot more than I anticipated. Camden does well around children that he knows, for example, in preschool. He tends to be a little shyer when it comes to kids he doesn't know, but there was sort of a bond that was created with the other kids. He continues to ask about them to this day. "How are they?" He sees a picture, he wants to know, "Oh, there's so-and-so." He was drawn to them, and they shared a lot of experiences, I thought. Beyond that, what surprised me? Not a whole lot. Camden always exceeds our expectations. I think that we know that we're the ones often that hold him back. He's our only one, so we tend to be very, very cautious, but Camden had a blast. He had an amazing time. He called it the Royal Caribbean Hotel, and he's ready to go back and keeps asking about it.
AotS: Mark, for folks who are still out there that want and need this break and just experience a relaxing, fun adventure, what would you say to them?
MB: I would say that it is an experience that you will ... you'll wonder why you didn't do it long ago. All of the anxiety and fears that you may have, like I said, Autism on the Seas have seen those issues, problems. They've already been through that. Every child is different, of course, but they're prepared. They're prepared to handle your fears, and you can always talk to them and you will learn quickly that those fears are exaggerated among the parents and not so much the child.
We realized very quickly that all of the things that we were worried about, we were worried about in our heads, and it was really not founded. I would encourage parents of autistic children, you deserve a vacation. Caring for autistic children is difficult. It is extra difficult compared to non-autistic children, and I think that wears on parents, and I think you need a break.
This is the perfect way to get that break. I love to cruise, my wife loves to cruise, and to me, this is the perfect vacation. We're going to Alaska next year and we're going to make this an annual thing, because I can think of no better way to do it. This is how you relax as a parent of an autistic child.
When typical families plan a vacation, their dreams transport them to picturesque destinations filled with excitement and new cultures, islands of adventure, serene tropical resorts, and cruises that offer something for everyone. In contrast, families with a child on the autism spectrum or other cognitive impairment, often don't dare to entertain their vacation dreams because they cannot overcome their fear of stress, meltdowns, embarrassment, and a host of other concerns. That's how Tiffany Meyers felt. Tiffany has a typical 17-year old son, Noah and a 10-year-old son, Aidan, who has autism and a number of stated phobias. Nevertheless, she was determined to take her family on their first vacation since Aidan was born. She found Autism on the Seas and booked the trip as a Christmas present for her sons. They sailed with us on a seven-night Royal Caribbean cruise to Nassau/Bahamas. Here's her story.
Autism on the Seas: Tell us a little bit about your cruise. Where did you go?
Tiffany Meyers:We traveled from New Jersey and we went to Port Canaveral, Florida, first. From there we went to CocoCay, which is Royal Caribbean's private island and then we cruised over to Nassau.
AotS: You were feeling very anxious up until the day of embarkation. How did the initial onboarding process go?
TM:So, when I found out in December that we were going to be able to take this trip, I was so excited. I thought the wait was going to be forever. Fast forward to June and the packing starts. I'm thinking this is wonderful, we're going on vacation. It wasn't until I got out of my friend's car, who brought us to the port, and I handed my luggage over to one of the gentlemen there, I looked up and I saw the ship... I can't even explain the emotions. It was this overwhelming fear. I looked up at the ship thinking, what did I do? I've gotten my family into this situation. What kind of mom am I? I cannot believe I'm doing this to them. I'm thinking, once we're on that ship, we can't get off. I was terrified, and I'm really trying to just contain my emotions and put on a happy face, but it was very, very, very hard. Once we proceeded to the front of the building, the first thing we saw were these bright orange balloons and a young lady standing there with her orange shirt. I knew who she was, and she knew who we were, and she came right over. And no kidding, within five minutes of meeting her, I was crying.
Autism on the Seas – On “Special” Vacation with Kim and Andrew Poppins
Autism on the Seas recently caught up with Kim Poppins, a single mom of a handsome teenage son with autism. After a stressful divorce, Kim needed a break to find some space, have some fun – and not feel isolated. She found the Autism on the Seas Facebook Page and quickly connected with other families. After listening to others’ experiences and sharing her vacation dreams, Kim decided to take the plunge with her 16-year-old son, Andrew, and joined AotS and staff on a 7-night Royal Caribbean cruise last February. Watch our podcast and read the Q&A below to hear her story to learn about the positive effects this trip imparted on her and Andrew.